Mom Creates Tumblr Account To Show Faces And Stories Of Kids Impacted By AHCA

Unless you’ve been living under a rock — and given the current news cycle, who could blame you if you are — you’ve probably heard that last week the U.S. House of Representatives narrowly voted to approve the American Health Care Act (AHCA) as a replacement for the Affordable Care Act (ACA). The bill now moves to the Senate for further consideration and possible revision.

In addition to slashing Medicaid funding, AHCA is loathed because it would allow states to adopt a waiver that permits insurance companies to deny coverage or raise premiums for those with pre-existing conditions — which is currently prohibited under ACA. And those pre-existing conditions we keep hearing so much about? Under the AHCA, they would include nearly everything from type 1 diabetes and cancer to depression, rape, and pregnancy.

Not surprisingly, most of the country is pissed. This health care bill is so dang awful that it might as well be called the Women Are Screwed Act, the Who Cares About Children Act, or the GOP Is Heartless Act. But with all of the banter about waivers and pre-existing conditions, and analysts spouting numbers and statistics that we can’t understand, the actual impact of the law can get lost amidst the noise.

One mom is trying to change that by amplifying the voice of those with the most at stake — the children and families living with pre-existing conditions that require lifelong medical care and services. When Oregon mom Rashelle Chase heard the AHCA passed the House last week, like many of us, she was saddened, angered, and deeply concerned. But she was also terrified about what the law would mean for her son and their family. You see, Chase’s son Leo has cerebral palsy, and he relies on several critical services that are at risk under the AHCA.

Frustrated by the focus on numbers and statistics, Chase wanted to put faces and stories to the issue. There are real people — children, seniors, and other vulnerable citizens — impacted by the law, after all. So instead of drowning her frustrations in a pint of Ben & Jerry’s, like I want to do, Chase created a Facebook page and a Tumblr account to share the stories of children with pre-existing conditions. Chase told Scary Mommy she started by sharing her son’s story in an effort to show legislators and others that children are not a “pre-existing condition” — they are children. In just a few days, more than a dozen others have joined to share their stories, as well.

Chase also rejects the implication that children like her son who are born with congenital disabilities are inherently flawed. “How can the way our children were born be considered a pre-existing condition?” Chase said. “In the case of kids like my son, it’s simply part of who they are, how their body was formed, before they even drew breath. My son was perfectly made and should not be discriminated against for the way he was born.”

In an average week, Chase’s son Leo sees a handful of specialists — including speech, physical, and occupational therapists — each of whom is essential to his medical care and well-being. If coverage to these services and medical care is denied, or Chase’s premiums increase, Leo could suffer substantial setbacks in his treatment and development. Even if coverage isn’t denied outright, if premiums are increased to the extent they are unaffordable, the effect is the same as essentially denying coverage. In Leo’s case, an increase in premiums might mean choosing between essential therapies or foregoing an appointment with a neurologist.

AHCA’s cuts to Medicaid alone would have a substantial and negative impact on Leo and several other children with special needs because it would directly impact funding for special education programs and services — which are critically important to the overall care a child receives.

“The services my son receives make up a blanket of care for him,” Chase told us. “Cutting one piece of it would impact all of the other pieces as well.” For some children, special education services are the only care the child receives.

Chase emphasized that her concerns aren’t about politics, but about what is right and ethical — taking care of children, low-income persons, and senior citizens. The issue isn’t about political party, and who’s right or wrong, but about who we want to be as a nation and as a people.

You can help spread the word about the real impact of AHCA on children like Leo by sharing the link to More Than a Pre-Existing Condition with others, and if you’re a parent of a child with special needs, join the conversation here.

“The most vulnerable in our country shouldn’t have to carry the costs of our nation’s health care system,” Chase said. “Health care has turned into a political issue, with their side versus our side, and no one wins with that attitude. This is just too important.”